Growing older, and planning for the future

This is a personal story, and it does have a moral, that we all may need a Plan B. When I was born, in 1937, my male age-cohort had an average life expectancy of 65 years, the girls 68. I retired at 65, and that was in 2002, seventeen years ago. In my head, so to speak, I am ageless, but if you press me, I will say that I feel about 37 — old enough to know how not to repeat past mistakes, and young enough to be able to do most things that I did when I was twenty. That was the case until a few months ago.

In 1991 I fell in love with, and married, the woman who had run the hospital ward I was in after the excision of a large melanoma on my leg. We were both refugees of failed marriages, had never met until I went into hospital, and wanted to build a new married life together. One of the first big things we did was to buy a house, which we later renovated and extended. She retired shortly before I did, and for ten years or so thereafter we had the sort of life that you see in the ads: we were physically active, travelled overseas, spent a good deal of time at another house we had on the south coast of New South Wales, and generally enjoyed ourselves. I became chairman of this and that, the roles you are likely to get if you’ve had the sort of life I had enjoyed.

Around 2012, when I was 75 and she was 70, came the first signs of possible trouble, though neither of us identified it as such at the time. She wanted to record television programs for later viewing, so I bought the appropriate gadget. No matter how I tried, I could not get her to learn how to operate it. Even a clear set of written instructions did not work. In the following year she stopped working on a project we were both doing, because she found it too difficult. Skip ahead another year, and she decided not to play bridge any more, yet she was highly ranked in our club. Her partner had moved away, that was the reason, and she didn’t want to learn a new partner’s style and strategies.

By now there was something plainly wrong. She would sit in a chair and stare into nothingness. ‘I’m not right. I’m just wrong,’ she would say, and we commenced a long series of tests, for heart, stroke and the rest. Finally I twigged that the problem was in the head, and another series of tests produced a finding of ‘mild cognitive impairment’. This is the beginning of dementia: your brain is receiving and/or sending scrambled messages; you are liable to forget something you have just heard, you will have difficulty in assembling information into a sensible whole, and so on.

We do not know a lot about dementia, but its incidence is growing as the population ages. My wife knew something was badly out of kilter with her, and she had run a ward for geriatric patients at the end of her service as a nurse, so she knew quite a lot about dementia. Nonetheless, the diagnosis was a shock to her. We grew much closer together, if that were possible, because I became through necessity the ‘Bub’ — the ‘back-up brain’. And the diagnosis led us to plan for our future: since dementia worsens slowly as you age, we ought to consider moving to an ‘independent living unit’ close to a high-care dementia unity. Canberra has several of them, which we began.

Finally we put our names down for a new development that would be ready in a year or two, with a high-care unit to come in the early 2020s. More, we managed to get exactly the floor plan and the elevation that we wanted. We then spent weeks working out, with a measured plan, which items of our furniture would come with us, and where each would go. It was enjoyable, and while we loved our house, which we had owned for twenty-five years, the new development grew in our minds, and raised the excitement level. We chose our real estate agent, fixed an approximate time for the sale, and went ahead with our planning, visiting the new development every week or so, and meeting the other future residents at meetings organised by the development’s owners.

After tennis one morning I felt a soreness in my back that had not been there previously. I was to see my chiropractor in that week for my three-monthly visit, and told him about it. He felt and prodded, and said that I should have an X-ray at once, and he would wait for the results and tell me what they were. This was most unusual, but he wouldn’t be drawn further. At dinner-time he rang to say that I should see my doctor, at once; there was a problem. Alarmed, I managed to see my GP late on the next day. He saw the results and said I should see a haematologist whom I had seen once before. All this was happening at a fast speed. The haematologist told me that I almost certainly had a bone-marrow cancer called multiple myeloma, and the faster I went into chemotherapy the better. I also had a compression fracture of the spine and osteoporosis. I was indeed not well, though I didn’t feel especially sick.

That was in July 2018. I tolerated the chemotherapy well for several months, and then fell really ill with a catastrophic collapse of my bowels. That put me into hospital, and gave me the highest possible ACAT rating (the Aged Care Assessment Team provides a summary of how ill you are, and whether or not you need a nursing home). After two weeks in hospital my wife and I moved into ‘respite’ at a nursing home. By now I had lost nearly a third of my body weight, and looked rather like a WWII survivor of a Japanese POW camp. I was weak, and unable to do much. As time passed it became clear that I would not be able to function in an ‘independent living unit’, and we were able to extricate ourselves from the new development we had planned as our next home.

What then? The nursing home became our home while we looked for alternatives. One of them would not allow us to have a double bed, so that one fell through. Finally, we chose to stay where we had been since November last year. We were very lucky, for a variety of reasons, and have been able to acquire a second, sitting, room adjacent to our bedroom, which allows me space to write, and provides a home for some of our art, books and CDs.

And while I am still awfully weak, the signs are good. The blood tests show a considerable improvement in my body’s fight with this cancer, and a recent biopsy put me close to the top five per cent: ‘Very Good Partial Remission’. So I fight on, gain a little weight, get stronger, but all of it slowly. What we have and where we are was not part of our Plan A at all. But it works, and we have adjusted to it. Before the cancer I was full of confidence that we would be OK in the new development, and even after it I was pretty sure that I would be right when we needed to move in. Our kids were much less sure, and they were right. We ought to have had a real Plan B. What it would have been was a nursing home, a possibility I had not really considered.

Politics

The Liberal/National coalition has another four years to govern New South Wales. I’ll write about that outcome in my next essay. The data will be better then, too.

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Thanks for sharing that Don. As they say, it is what it is. Anyway, the only request that I’ll post on your platform is, if you pick up any info on strategies to prevent dementia, please pass them on. I was born in 1938, so we are comparable age-wise. Lately, I have become much more interested in dying with dignity than I have been with whatever on climate change, or emission targets for 2050, or even 2030. So, I’m going to use your platform to give a plug for two organisations which can make a contribution to dying with dignity. They both need more members, so this obviously applies only to Australian residents although I suspect that you have international fans also. The first is Dying with Dignity Inc (DwD) – http://www.dwdact.org.au (the act signifies the ACT but I’m sure they are national) and the other one is COTA (Council for the Aged) – http://www.cota.org.au. I am now going to continue this conversation on Peter Bobroff’s email list, which comprises many ACT residents, some of whom I see regularly for lunch. I am sure that many of them are also on your list. My parting thought on society concerns Captain Oates. When he walked out of his tent into a blizzard saying that he might be gone for a while (and he’s been gone since then, 1912) what he did was seen as an act of heroism, self sacrifice … ‘greater love has no man … etc’. How things have changed.

Dear Don – I found this very interesting and I am full of admiration for you. My mum cares for my Dad who has Dementia and Alzheimer’s. He is 81 and still at home but the time is approaching when she will need to arrange Nursing home care. I am Jean Brown’s (nee Hill, daughter of Isabella) granddaughter and I actually visited your site to buy the book on Alec and Edna. Hope you are able to place me in the tree. Best wishes – Jane

Much appreciated Don and I wish you well. Most don’t get this transition but the facilities available you explained are worth knowing about. Recently my closest brother died it was about seven months from knowing something was wrong. My aunt died from the same thing you have but that was nearly 50 years ago. There was no warning and she was gone within a week. Something that still affects me emotionally was that she had willed her body to medical research. It was not necessary but this meant there was no service or closure.

Thanks for filling us in on the details. You have certainly had a rough time but at least the chemo’ has worked well. You are right about plan B – it is obvious really but I am guilty of not giving enough thought to it.

Very grateful to read your story Don as I am struggling with health problems and knowing your struggle helps me put my act together. Life is still wonderful and I too am writing a novel and learning to play zBridge amongst other things.
A lot of loving thoughts go to you and your wife. Fay

Great to see your enthusiasm in spite of your problems, Don. I’m a ’39er and I have to get the whip out on myself to get through the day’s chores but so far my health has been OK with the exception of back and shoulder problems.

My cheese ‘n’ kisses and I still have a 150 acre farm which we used to produce a fair amount from but not these days. She’s 79 and keeps telling me to sell up and move to a retirement village but so far I have convinced her it’s the farm that keeps us active. And the vegie garden and chooks do her the world of good.

Same with the two storey house. Those stairs! For and against.

And dementia! I often have people contact me who I have designed and built complex stuff for 30 years ago who now want modifications or assurances that it will last another 30 years etc and it is hard to recall the details involved.

I’ve been revisiting, and appreciating, your “What was it all for?” for my own purposes lately. The fact that you’re still writing from that room adjacent to your bedroom is a heartening example to the rest of us still seeking to sustain our curiosity and productivity in retirement. That it is still being done despite the considerable and dismaying challenges to your health and quality of life is even more exemplary. I hope things continue to improve. All good wishes, Jim Walter

Not much, in my view. Most of my possessions have gone to family and friends. My writing is available for anyone who wants to read it. I have few regrets and no bucket-list. I want to keep active and creative as long as I can, and I hope the end will not be unduly painful. What did you want me to think about? Or was your question addressed to someone else?

Good Gawd! You MEN! Such stoicism! Such “one foot in front of the other”/”carry on mate”/”best wishes” comments! So, Donny, let me just FLING my arms around you and our darling Bev! I know my own darling Ron will do the same. He and I are sooks and PROUD OF IT!

Hi Don, I’m a long time reader, first time commenter.. mainly read your ‘essays’ because I find them thoughtful, relatively balanced and usually roughly in line with my own thoughts but sometimes they add a new perspective which I hadn’t countenanced. I find this of great value. So would be keen for you to continue writing as long as you can, and want to.

I am slightly younger at 61, and have had a great career in computer engineering. Now sort of retired, although still very active. My question for you is given your experiences is there any sage advice you could offer to someone who is just at the retirement age, but with a long bucket list!

Don, My sympathy and admiration for your wonderfully stimulating essays and this heartfelt account of your recent travails. So true we need a plan B. I fondly remember your brief visit to Townsville and sharing some lovely coffin Bay oysters with both of you before you boarded the train to Mt Isa. Every best wish

A reader asked me about advice on what to do after retirement. Unfortunately I have flicked that comment into obscurity, for which my apologies. But I was given advice when I retired, which was not to do the first thing that someone asked me to do. And I followed that advice. I did the second thing…

In general, I think it is a moment for a good pause. You’ve been working for a long time, and there has been a firm structure to your life. There won’t be one now, and unless you work for something else you’ll have to create a structure for yourself. It was the lack of structure that I noticed, and then the loss of my most able secretary. I had been fortunate to have a secretary since 1971, and I had to relearn all sorts of skills I had had as a young man. Wait and think: what do you want to do with the rest of your life?

Don, so sorry to hear of both those health struggles, and so glad that there is some light. Thank you for sharing.

There but for the Grace go all of us. It’s the main reason I wish we wasted less money on windmills and panels — we could be putting so much more blood, sweat and dollars into medical research. Some things matter.

Best wishes and warm thoughts that you both can continue to stick around and share your insights with the rest of us as long as possible.